Young adult in need of advice on CFS

Discussion in 'Fibromyalgia Main Forum' started by kamui957, Oct 24, 2011.

  1. kamui957

    kamui957 New Member

    Currently I'm 24 years old, male, and in late 08, early 09 I was told that I had both Chronic Mono and Chronic Fatigue Syndrome by my doctor after several months suffering with no answer from clinics and immediate care centers. I was a student at the time and ended up being kicked out of college because they refused to present to me Medical Leave of Absence papers when I requested them and due to my decreased stamina and constant mental fog it never occurred to me until several months later to look them up online. I spent most every day in bed and when I was awake, I was barely coherent. My doctor provided several notes and invitations for them to call him but nothing helped.

    It's been a few years and employment has been shaky at best. I gravitate towards Help Desk work, but at times even that is difficult. I have days where I can't bring myself to leave the house because I feel so bad, which has a very negative impact on attendance, obviously.

    I'm not really sure what to do. I'm trying to save up to pull myself out of the debt that I went into keeping myself afloat while I was sick (and some bad decisions that I was coaxed into while sick). I have tried researching to see if I can qualify for any forms of disability benefits. It is all very confusing and due to my age it seems impossible to get any help. I'm without health insurance because I can't afford it, though the place I just started working from home for seems to offer it, but even this job is increasingly difficult as it is a customer service job, and when you can hardly keep yourself mobile and feeling well, dealing with the kings and queens of first world issues is an oddly taxing job.

    I know I'm suffering from depression from this, and it doesn't help that very few people believe or understand what CFS is. My own parents don't believe it half the time until I almost pass out in front of them just from going to the grocery or walking up the stairs.

    Some general advice on this would be great, especially considering help for people my age with this problem seems scarce when I search for it. Any help at all would be great really.
  2. tigerlily0677

    tigerlily0677 New Member

    Hi, I was dx'd with cfs and fibro at 21. At that timeI thought fibro and cfs was diagnosed to anyone who had symptoms but doctors couldn't find a reason, so for me the dx of cfs and fibro wasn't a happy thing for me. I am so happy that they have started making advances in learning about the syndromes and are looking for treatments.

    I stopped being able to work in 2004. I had a combination of bipolar, fibro and cfs. before I got Social Security I didn't have any insurance. I contacted the state and because I had no income I was able to get medicaid. I wonder if your state offers something similar?

    Before I stopped working, I would take a job and would either have to quit or be terminated because I would have to take too many days off. I was spinning my wheels trying to work and then losing my job and doing the same thing over and over, I think the stress of that alone made the pain and fatigue a whole lot worse.

    Have you thought about applying for Social Security? It's tough on the ego and it's difficult to get but if you get a lawyer to help you, it might be easier to get it. Also, have you considered talking to the Dean at your college and just be honest with him and tell him whats going on. I had to do that. You might be surprised, he might be very understanding.
    Well, I hope this helps.
    Take care of yourself
  3. kamui957

    kamui957 New Member

    My doctor seemed very knowledgeable on the subject but moved out of the office shortly after and wasn't taking many new patients at that point. I also lost my insurance when I was kicked out of school and haven't been able to go see anyone else since because money has been so tight.

    Only reason I got a smartphone, my only real luxury, was so I could check up on the temp jobs I was working that have since evaporated. Those were helping since they were short term IT jobs and I'm good with computers. First place, the project folded completely and we were all let go systematically for made up BS by the supervisor there. Next place I worked I managed to hold for a year thanks to an extremely lax attendance policy but had to deal with lots of workplace theft and muggings outside the front door. Heck, people walked out with their equipment and sold drugs out back. Nice place to work. It closed when the company they were contracting for pulled their funding. Last temp agency I worked for placed me at worse and worse jobs until they stopped placing me altogether, despite good remarks from the companies they placed me with. Now I'm working from home doing phone support for cell phones. It's great to work from home, but when you have to cater to the whims of the kings and queens of first world problems when you don't even feel like standing and couldn't afford a fraction of what they are paying on phones they don't care about breaking... it's mentally taxing. If I had to do this and school, I don't know if I could really do it. I'll set my alarm for 8 or 9 and end up waking up at 2, work at 4, work 'till midnight, and then pass out. I try to stay up but begin feeling sick the longer I push myself, and then don't feel any better the next day. Almost like I didn't sleep a wink. Housework doesn't get done, don't get to see my fiance (who's supportive emotionally, but worse off than me financially)... It's an endless cycle that I've been in for 3 years now. Thankfully I always turn up something so I don't have more than a couple weeks of being unemployed, but since I never work long enough at any posting to pull unemployment (dunno if you even can off a temp job) if I do end up without a job for a long time, I have nothing to fall back on. Every time I have anything saved, something always happens.

    On social security, a lot of the info I've read on it makes it seem extremely difficult for someone my age, especially since I haven't paid into it all that long, to get; I can't find much info on how much it pays out to see if it will be enough to make ends meet either. I'm seriously looking at it now though because I'm afraid if I lose this job, I won't have another and I don't have anyone or anything to fall back on if that happens.

    As far as the dean goes, I'm not sure talking to him would be any good and I'm very much against going back to that school. I'm talking to another college about getting in. I'll be applying once I can get up the application fee and submitting a letter with it for the dean of admissions, as per the transfer department's recommendation in my situation.

    Thanks a lot for the info and for your experience. I'll start researching the lawyers in my area and see if I can find one who is reliable and has experience with CFS and Fibro.
  4. Forebearance

    Forebearance Member

    Hi kamui957!

    Have you been to joey's group for people under 40 with CFS?
    It's called healkick. I think you will find you are really not alone.
    I was 28 when I got sick, and it affected my grad school plans.
    Of course, now I'm a lot older than that.

  5. pastorwife

    pastorwife Member

    I don't have a solution for your dilemas. I have been diagnosed with Fibro, CFS, depression, bipolar, seems like - you name it , they say I have it. Every new 'cure' or 'treatment' causes me more pain and fatigue. I had the absentee problems with every job I had, but was able to work at a full-time job for about 3 years before they wanted me out. I even had a job that stated "Unlimited" sick time. Even tho I went to the doctor every time I was absent, that was not enough for them. Their response was "its not really unlimited". When they gave everyone else I supervised a 3% raise or higher and gave me a 1% raise, I found another job.

    Back when I worked full-time, I hadn't been diagnosed with anything but flu or sinus infections.

    I have been on SSDI for 10 years now. But, I think you have to have worked in order to qualify. Some states have their own disability coverage for residents. You might want to check into that. You probably qualify for other assistance (food stamps, Medicaid, etc.) if you can't hold a job long enough to make enough to support yourself. You can check for qualifications online or go to your county's social services office.

    As long as you don't feel up to working, you will have the absenteeism problem. It's not that you are a bad sound like you WANT to work, your body just won't let you. Get as much support as you can, emotionally, financially etc. Some senior centers might be able to guide you with who you could contact. Good luck and I hope you find some energy to read this and to pursue what you need.

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